‘In the shadows of life: The complexities of choosing death’
Project ongoing
Mark Butler, 66, lies trapped in bed, his body ravaged by a motor-neuron disease. Having lost nearly all function, his limbs are limp, his muscles are atrophied, and lifting his index finger is his only means of moving after caretakers put him in a wheelchair. In a few months, he’ll lose even that.
With his condition advancing and without a cure, Mark is determined to pass away on his own terms through voluntary assisted dying.
Over the past decade, in stark contrast to most countries worldwide, Australia has witnessed a major shift in attitudes toward VAD.
Starting with landmark legislation passed in Victoria in 2017, nearly all states and territories have since legalised VAD.
Despite these country-wide enactments, the Catholic Church, which controls the majority of health facilities in the Australian Capital Territory, has vowed to put up a fight, potentially prohibiting people like Mark from fulfilling their hopes of a peaceful passing.
Mark wants to be the first person in Sydney, and the state of New South Wales, to pass away under the VAD law that went into affect in November last year.
Though he fears his body may not last that long, his resolve remains strong. “It goes back to choice. I want to know that I can make this decision for myself.”
My ongoing project follows the lives of Mark, and Kym Watson in South Australia, as they navigate the complexities of accessing VAD while struggling with debilitating, incurable illnesses. These images highlight not only the autonomy they’re slowly losing and the daily pain they experience as their bodies succumb to disease, but also the quiet moments of connection with loved ones and caretakers.
On April 4, 2023, at his home in a small town near Adelaide, Kym Watson checks if his heart rate monitor is still working after putting on his oxygen machine for a nap. Kym, who suffers from Multiple System Atrophy, becomes exhausted easily and takes at least one nap a day for several hours with a machine to help him breathe.
On July 29, 2023, Mark watches a movie in the middle of a sunny Sydney day with the curtains drawn. It's tricky to leave his second-floor apartment without someone who can control his electric wheelchair. If he's not sleeping, Mark spends most of his day watching TV shows and movies that he controls with voice commands.
On March 9, 2023, Mark's carer showers him at 4 P.M, hours past his usual schedule. Mark says his daily roster of rotating carers often means he "doesn't know what to expect each day."
Kym and his carer take a walk and ride through town to get a coffee. Kym was about halfway through his mandatory doctor appointments for the VAD process when his condition improved, which he says is from meditating. But, it meant he was no longer sick enough to qualify for VAD and would have to start the process again when his condition worsened.
Right before a mid-morning nap, Kym takes a moment to catch his breath, admiring his model yacht. Kym grew up on the water and planned to sail around Australia after retiring. But, he kept getting sick and was diagnosed with multiple system atrophy. The trip was cancelled. "That broke my heart."
On the morning of April 24, 2023, a carer arrives to help Kym with his medications and softly wipes away tears from eyedrops. Kym lives like he's running out of time and needs to be told by others to slow down. Very dry eyes and trouble breathing are symptoms that hit when he's over-exerted himself.
Mark, whose wheelchair sits here by the window, says VAD is about choice. "I want to know that I can make the decision for myself. I can see by weighing the pros and cons that it's the right way to go. For me."
Mark Butler's carer changes his catheter while he watches TV in his Sydney apartment. Mark is dependent on carers to do almost everything for him as he quickly loses all autonomy over his body.
A family wedding photograph sits hidden behind an oxygen machine next to Mark's bed. Mark grew up in Sydney in the 1960s and '70s in a tough neighbourhood with two sisters and a brother. He says he was "an outsider" in the family, but was incredibly close to his mother.
On April 22, 2023, Kym and his wife Cynthia, for what feels like the 10th time that day, check to see if his heart rate monitor is working. "I tried to tell my wife: Go, go and live your life now, because we missed the bus. So when I pass away, the bus starts up again and takes them on their life's journey.".
As someone who didn't learn to swim until 33, moved to London right after high school, and came out as gay in the late 1970s, he says he's used to challenges. And, that's how he wants to be remembered: "For changing my life and going in the direction I wanted to go."
Mark's carer prepared a routine lunch and feeds it to Mark in small bites. Swallowing is one of the last things Mark can do without help, but that is slowly slipping away and his diet consists mainly of soft foods.
In the evening of April 21, Kym's wife tries to get his heart rate monitor working. Kym's ladybug heart monitor is a source of constant dark humour as forks are often used to get it working again.
Mark's carers move him to his wheelchair after a shower. Knowing the VAD application process will be lengthy, Mark collects as much evidence as possible to prove that his condition is deteriorating.
After a rowdy barbeque on April 22, 2023, Mark hugs a close friend goodbye. A complication in the process of VAD is the person must remain aware and conscious of their decision to die right until the end. So, Kym has a backup plan: "I'm learning meditation, in the hope that I can stop my own heart, if I get sick of it."